12 November 2002
Okay, so you’ve gotten your child to a specialist, done an assessment or three. Someone whispers autism. You recoil. You run away, fast as your legs can carry you. You accept some services but not too many and god knows you don’t fight for more because that would mean there’s something really wrong.
Get over it.
I know a woman whose son – while clearly not on the spectrum – has articulation problems. At age almost-four, I can understand one word in five. He drooled until well past three. He also has little awareness of his body in space, will cannon into you with the force of a small but friendly hurricane. She’s taken him for one – no, two – speech evaluations but still doesn’t believe his problems are anything to worry about. My take? This child doesn’t need speech as much as he does occupational therapy. He’s not going to get it. He’ll be lucky if he gets any help at all.
I know a woman whose daughter is moderately autistic. After her first IEP when the girl turned three, she said "Oh, we’re not getting any occupational therapy, they said she didn’t need it," and "Oh, we’re only getting one hour a week of speech therapy, they said that was enough." She didn’t like it but wasn’t going to make waves by asking for due process. Who suffers by her silence? Who do you think? Her daughter.
I know a man who says his son is at the extreme high end. Of what, he won’t say. He never says the word. Instead, he talks like a preschooler learning the alphabet "We call it A," he tells me. Because, you know, if he said the word, he might have to admit his son had… well… that. And that would be bad, right?
His son, by the way? Is not at the extreme high end. Yes, he is fairly mildly affected. Yes, he’s high functioning. Yes, he’s improving. But he has serious deficits nevertheless. Does his father’s whitewash help him sleep better at night? Maybe so. Does it help his son? Doubtful.
Did it hurt when I first put the word autism next to Damian’s name? Of course it did. Hurt like hell. Still feels like a disconnect. I know my child, I know his warmth, his silliness, the intent way he asks questions and then uses the information days later in unexpected ways. I know my child. He’s a great kid. But I didn’t fight the autism label. Because it doesn’t matter what you call this as long as you call it something. As long as you get treatment and lots of it and early, early, early. If you call it autism at age two or three, if you heap on hours of one-on-one therapy and carefully supervised group interaction, then maybe, just maybe, you won’t have to call it autism or alexia or Asperger’s at age twenty or thirty.
I’m learning, though. You can’t tell people to get their children a pile of services. You can’t spill out all the information stored in your own head like a chipmunk stores nuts in his overstuffed cheeks. You can’t force-feed your own passion into someone else’s psyche. Love of a child is a powerful force, but fear is powerful too. And you can’t take someone else’s fear away. You can only hope that fear goads them into action sooner rather than later.
I can’t change the world. I can only help my own child. And hope that my example makes at least one other parent a little less afraid of doing the same.
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copyright 2002 Tamar